What to Expect at Your First ACHD Appointment

Some adults feel apprehensive about receiving care at a pediatric hospital. That’s understandable. Please know our Adult Congenital Heart Disease (ACHD) Program staff are trained in internal medicine and also, specifically, in the care of adults with congenital heart disease (CHD). 

Adult cardiology programs have great expertise caring for common heart diseases that develop in adulthood, like atherosclerotic coronary artery disease. At Cincinnati Children’s, we specialize in congenital heart diseases, structural heart abnormalities that people are born with. 

CHD is less commonly seen in adult settings, and adult cardiologists often have limited training in the specific issues related to CHD.

We enthusiastically collaborate closely on congenital heart care 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 each patient’s care.

Your Experience at Cincinnati Children’s

At the Cincinnati Children’s ACHD Program, we are happy to address any questions you have about receiving care within a primarily pediatric hospital. We go to great lengths to make all of our patients comfortable, whatever their age.

The information on this page will also help you understand what to expect before, during and after your first appointment with us. Please let us know if you have any questions.

Making an Appointment with the ACHD Program

We want it to be easy to receive care from our ACHD Program. You can contact us directly to schedule an appointment or have your provider send a referral. We have more than 10 locations for your convenience (though not every physician in our group can be seen at all locations).

Once we receive your request, our nurse coordinator will reach out to you to gather more details. This will include basic information about medical history, including your diagnosis, current concerns and historical treatments. 

They will obtain other information like operative notes or imaging studies, usually from the hospitals where you received care. Our physicians will review the information to consider if our program is the best fit for you. If so, we will consider next best steps for visit timing and associated clinical testing. 

Our team also works closely with other departments in the hospital and other providers and hospitals to connect you with additional services and care you may need.

Sometimes we determine that a patient might be better suited to see another type of doctor, such as an electrophysiology doctor, adult cardiologist or other provider. If that’s the case, we’ll talk to you about our recommendation and the reasons for it. 

Test results. You may be asked to provide results from previous tests you’ve had such as echocardiograms, catheterizations, exercise tests or cardiac MRI. If so, our nurse coordinator/nursing team will work with you to have these prior tests sent to us so we can review them prior to your visit.

Appointment scheduling. Patients are typically scheduled for an appointment within 1-5 days at one of our more than 10 locations after our initial contact with them. 

Out-of-town patients. If you live far away and prefer to have all of your testing and appointments done over multiple consecutive days, we may be able to provide support for lodging, a gas card (using grant funds) or transportation. This may be supported by insurance, and one of our social workers can help with this. Contact us for assistance.

On the Day of Your Visit

Before the appointment

• Allow two hours or more for your first appointment.
• Plan to arrive to the hospital 25 minutes early. This allows 10 minutes to park and walk to your appointment location, plus 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/health care proxy, if you have one
• Review our visitor’s policy. Our visitor’s policy can change based on illnesses that are circulating in our community. Please review the latest visiting guidelines before your appointment.
• What to wear. 
  • 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, do not wear any jewelry or metal.

Labs, MRIs and other tests. If specific tests or labs are required at your first appointment, we will let you know and we’ll tell you how to prepare. If you’re having an MRI, we typically request that the MRI be done about one week before your ACHD appointment so we have the results available for review.

Running late? If you are running late on the day of your appointment, please contact us to let us know.

At the appointment

Purpose of visit. While every patient is different, in general the purpose of your first appointment will be to:

• Review your medical history
• Discuss any recent symptoms 
• Conduct a physical exam
• Review test results
• Get a sense of your priorities and values
• 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 may see any of the following providers at your first visit:

• ACHD attending physician 
• Clinic nurse or medical assistant
• ACHD program nurse or nurse practitioner
• A senior adult congenital heart disease fellow, rotating pediatric or adult cardiology fellow 
• Pharmacist
• Clinical research coordinator
• Other available specialists such as an exercise physiologist, dietitian or genetic counselor
• Another specialty such as gastroenterology, hepatology, pulmonology or others

Research opportunities. You may be approached about research opportunities during your visit. We believe that research is integral to our mission to provide the best possible care for our patients today and into the future. It is, of course, your choice whether to participate in a research project. That decision will have no impact on how we approach your care.

Before you leave

We’ll carefully review next steps with you. We will work with you to schedule follow-up visits, including treatment, testing, imaging or any other appointment needed.

After-visit summary. We’ll provide an after-visit summary for you before you leave. This printout will include a summary of your visit, current medications and instructions for follow-up.

Follow-up. Follow-up plans are tailored to each individual patient. They range widely and can include medications, cardiac catheterization, surgery, cardiac rehabilitation or simply monitoring your health. We will discuss these plans with you before you leave.

Questions? Please let us know if you have any questions or concerns. Our goal is to answer all of your questions as best we can before you leave your appointment.

After Your Visit to the ACHD Program

Future plan of care. Some patients may receive treatment recommendations after you leave your appointment. This can be due to the following:

• Some cases are later presented to other health care providers at our multidisciplinary ACHD conference.
• You have surgery or another intervention scheduled in the future.
• Further testing may be scheduled in the next few weeks, and the plan of care can depend on those results.

If this is the case for you, the doctor will call you to discuss any further treatment recommendations. This may take anywhere from a few days to a few weeks.

Coordination of care with referring physicians. It’s important for your other doctors to be aware of the care you’re receiving from us. If provider information is in your chart, your referring physician will receive a copy of the after-visit summary. If there are other providers you would like to receive these updates, you can share their information, and we will add them to your chart.

Emergency and Inpatient Care

It’s important to know when to seek emergency care when you are an adult living with congenital heart disease. Depending on your condition, it may or may not be best for you to visit our Cincinnati Children’s Emergency Department versus an adult emergency department.

Before you leave your appointment, we’ll review with you what to do in case of an emergency.

We also provide inpatient care for our adult patients through UCHealth, and we collaborate closely with adult providers throughout all health systems in Cincinnati.

Special Considerations

• Child Life specialists are available to support patients and families at all ages and stages if needed. Part of their role is to help lower stress and increase positive coping.
• Patients with heart disease may also experience mental health challenges including depression, anxiety and post-traumatic stress. We work closely with psychologists and others in our Heart and Mind Wellbeing Center who can provide helpful resources if you need them. We can also refer you to a primary care provider if needed.
• If you have a family member who would benefit from being seen at the ACHD Program but is hesitant to come, we have several options to help. Contact us and we’ll put you in touch with the appropriate person.